Speakers Lending Their Stories for Improved Healthcare
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— Grantsville, MD
January 25, 2014
Panel Member Families USA, "Health Action." Baltimore, MD
January 29, 2014
Plenary Speaker Tri State Health Informatics Summit, University of Southern Indiana, Evansville, Indiana
January 31, 2014
Lecturer at Indiana University School of Informatics and Computing at IUPUI Colloquia, Indianapolis, Indiana
February 19-20, 2014
Lecturer College of New Jersey, Ewing New Jersey
February 26, 2014
Panel Member "Patient Experience Forum" HIMSS Orlando, Florida
May 8-9, 2014
Genentech Meeting, Washington, DC
May 15-16, 2014
Keynote Speaker National Patient Safety Foundation: Patient Safety Congress
April 24, 2014
Keynote The Sixth Annual "We Can Do Better" Portland, Oregon
June 6, 2014
Keynote Speaker Kansas Health Symposium, Wichita, Kansas
August 11-14, 2014
Keynote Speaker at HIC2014, Melbourne, Australia
September 30, 2014
Keynote at IdeaFestival ® : "Thrivals," Louisville, Kentucky
— Baldwinsville, NY
Patient Experience. Patient Satisfaction. Patient Safety. They'll impact lives and your bottom line - as will those expensive consultants you could hire to try to shift your organization's way of doing business - a way of doing business that has become as cultural and behavioral as it has procedural.
But maybe there's a better idea. Maybe there is a solution that isn't so expensive to implement, one which requires a top-down point-of-view that you can model for those who look to you for your leadership and ideas.
That's where Trisha Torrey comes in. She is ready to bring you that solution. She'll provide you with a new outlook on the way you do business, and will incite enthusiasm among all participants which will be positively reflected in your patients' outcomes, opinions and surveys.
When Trisha talks, providers, administrators and patients listen, learn, implement and succeed.
— Pueblo, CO
Jennifer Dingman is Founder of Persons United Limiting Substandards and Errors in Healthcare (PULSE), Colorado Division and Co-founder of PULSE American Division. She is also a member of the TMIT Patient Advocate Team. Jennifer has counseled many patients and families through the years and uses this knowledge and wisdom to teach providers to better understand the needs and concerns of patients and families. She also teaches patients and families how to better communicate with providers and navigate our complex system of healthcare delivery.
— Finksburg, MD
I am a federal policy development and evaluation expert (20+ year's experience) in the areas of federal health care delivery, oversight, and data collection efforts (CMS/CAP/FDA). I am also a recognized sociologist with 20+ years experience in study/clinical trial design who has participated, as a study participant, in more then 30 clinical trials over the past 40 years (CF--Bilateral Lung Tx 1999).
— Boston, MA
Alicia Staley is a 3 time cancer survivor committed to making a difference in the health care community. Ms Staley started the Staley Foundation in October 2007 as a way to work toward education, advocacy, and assistance for those affected by cancer as patients, caregivers, family, or friends. She shares her passion and enthusiasm for helping the cancer community by contributing to www.awesomecancersurivor.com. and www.thehitcommunity.org. With an engineering background and MBA/MS degrees in information systems, Alicia is working to find ways to bring difference cancer communities together to leverage knowledge, solutions, and support in efficient, effective ways.
— Houston, TX
I can speak intelligently about the interface between engaged patients and health information technology. This includes topics like Health IT privacy, engaging and communicating with technology, and more esoteric topics like Quantified Self.
— Orchard Park, NY
My total immersion in patient engagement and empowerment came with my job as a reporter, whose beat was health and patient-centered issues. Thus, when it came to my own health, I thought being trained to ask questions would ensure the best patient experiences, and that I would be completely capable of understanding proper medication management. However,I found myself unsure and fearful as I held the medication dropper: was it 3 teeny tiny drops per eye or 3 dropper-fuls. Why didn't I ask when I got them ? Why don't I call and ask now? Because it seemed a stupid question. I went for the dropperfuls. Ouch. Wrong! I realized then, that although educated and fully participatory in my health-care, seemingly simple instructions can confound. Since then, some 25 years ago, I have thought differently about patient and family involvement in health-care, and the importance of effective communication. It's not as straightforward as keeping to a Grade Level. Out of context, even single syllable words can cause anxiety: treat, stool, mass, void, gait. It's a different way of thinking and I'm using YouTube for Kathy Kastner's 10-second MedSchool as a prompt to think, talk and ask about it. .
Long before YouTube, I developed two patient-centered health education television networks (Healthtv and The Parent Channel) which broadcast in hospitals via bedside televisions. The Health Television System Inc was born in 1997. (www.healthtvsystem.com) To determine content, I spoke to viewers - patients and families -and learned more unasked questions that could play a role in preventing medication management errors. I produced Medication Safety with stay-safe strategies for patients and families one of which is having the courage of their convictions (or, more colloquially, trusting their 'gut') and saying something when something didn't feel or sound right. I saw it, and presented it as a win-win-win: helping prevent an error helps healthcare professionals of all stripes as well as the system itself. This won a top award at the American Academy of Family Physicians/Society of Teachers of Family Medicine Conference.
Another video, Advance Directives, less than 5-minutes long, proved just the right amount of education and empathy to motivate viewers (patients and their families) to take steps to create their own Advance Care Plan. I'm pleased to report that those impact results have been presented at several health conferences.
The video, Managing Pain -produced in collaboration with the Joint Commission, and pain managers from top notch hospitals - required fabulous discipline to narrow and prioritize key messages. It was an exciting, enlightening and energizing process, and I love work-shopping this, because it always provokes interesting and compelling reflective discussion.
I'm passionate about empowerment and engagement and particularly, in giving simple and practical strategies for what I believe is a common desire with patients, families and healthcare providers: respect, recognition and positive outcomes.
I speak about personal stories - mine and those I've learned about (some transcripts attached) and I write about this, and other insights, on www.ability4life.com
— Needham, MA
I have just completed a book entitled e-Patients Live Longer, The Complete Guide to Health Care Using Technology. It is about patient empowerment, education and engagement based on the premise that if individuals use the digital tools they use daily for their work to communicate with healthcare providers and research health issues they will experience better, safer health care. I can discuss the deployment of digital health records, email, evisits, smartphones, patient portals, health information exchange; how to use the web intelligently to find the right resources for a patient or for a provider to recommend to patients. I can speak to the issues of how to manage chronic illness using the latest monitoring technologies and to issues of privacy and patient safety and patient-centered care and what healthcare will look like in the next twenty-five years. I can address the issue of medical errork, medication adherence and as well as how to understand and address health insurance choices. I have written and spoken about telemedicine and all of the features and benefits of connected health, telerehabilitation, teletherapy and telehospice and home telemonitoring. I am focused on participatory medicine and base my writing and speaking on extensive interviews and research as well as on personal experiences with the health care system. In the earlier days of my career I presented many speeches at technology conferences and taught presentation skills to graduate students at Boston area universities and to corporate executives.
— Richmond, VA
I am a practiced and passionate speaker with deep knowledge of both patient experience and how to build patient/provider relationships.
As a journalist in hospital medicine, producing a monthly podcast series for The Hospitalist Magazine, I understand the challenges faced by clinical teams. I also know that only collaboration and partnership with patients will truly make the healthcare system work for everyone: patients, providers, and the community as a whole.
I'm the author of the Amazon best-seller "Cancer for Christmas: Making the Most of a Daunting Gift," the fast, fierce and funny story of actually *getting* cancer for Christmas in 2007.
I am comfortable speaking to patient, clinician, and business/admin audiences, and can deliver solid value to all of them. With my background in stand-up comedy (six years worth in NYC - dying is easy, comedy is hard, I know this at the cellular level!) I bring both humor and insight to the platform. Hey, I talked my way out of police custody in Saudi Arabia - I'm GOOD at talking!
My topics center on the patient experience, but I have lots to share with clinicians and the business side of healthcare as well.
- Programs on developing empowered patients, and patient advocacy
- Seminars + workshops on building patient/provider communication
- Social media strategies for health care
- Data management for patients
My YouTube channel:
Rates are reasonable. Passion is high. Message is powerful. Win/win/win!
— Tampa, FL
After spending her career in healthcare as an RN and in healthcare IT, Amy struggled to find out what was wrong with her child. After a journey that lasted over a year, her 11 year old daughter was diagnosed with a very rare automimmune disease. Amy speaks to the challenges of diagnosing rare conditions, the struggles in a care plan across many providers, and the every day life of being a caregiver. She passionately shares her ideas on managing rare chronic illnesses and how we can improve the process. Additionally, she is a strong believer in the collaboration between patients and providers, and is a huge advocate for patient to patient help in managing life with a chronic disease.
— New York, NY
I was first diagnosed with cancer at age 20 and spent two long years in treatment. Since then, I have been treated for three additional different cancers, a serious heart condition and all the chronic and acute illnesses produced by that many diagnoses and that much treatment.
After finishing my first cancer treatment, I looked back at the experience and realized how much its success depended on me: I had to show up for the treatments, take the pills and get the tests. If I didn't, all the drugs and technologies, all the wisdom and skills wielded by my doctors would have no effect on my cancer. This insight is the basis of my commitment to help people understand their roles as patients and to act knowledgably to find good health care and make the most of it.
In 1992, I founded the Center for Advancing Health (www.cfah.org), a non-profit organization in Washington, D.C., with support from the MacArthur Foundation in order to embody that commitment. In my role as President of CFAH, I serve as a patient adviser and board member to public and private national health research, health care and health policy groups.
I speak and write from the perspective of a patient seeking and using health care. I base my comments on my own unfortunately extensive health history, close reading of the scientific literature, opinion surveys, focus groups and interviews with hundreds of patients about their experiences with health care.
I frequently speak to audiences of health professionals, policy makers, administrators and payers about patient engagement, that is, how can they encourage and help us to participate more actively in our health and health care. Research conducted at the Center for Advancing Health has identified the specific tasks each of us patients must take on to benefit from our care. These are described in the Engagement Behavior Framework (listed in "Speaker Resources").
My remarks address how innovations such as patient-centered care, the Patient-Centered Medical Home, Electronic Health Records and other health information technologies, self-management, shared decision making, care coordination, cancer survivorship, team care, evidence-based care, comparative effectiveness research, incentives and employer-based programs can support us in taking very specific actions in order to benefit from health care.
My talks to the public generally or patients specifically often touch on these issues, but are shaped to meet the concerns of the audience, describing barriers we all face, telling stories about how I and others have addressed them, what we have learned and what each member of the audience can do.
I believe that health care is a shared enterprise: that my clinicians can't ease my pain or cure my diseases without my participation, just as I would not be here today without theirs. My aim is to encourage professionals and patients to find a common understanding of their shared challenge with the aim of helping each individual live well for as long as possible.
I blog weekly at www.preparedpatient.org about what it takes for me and the hundreds of people I have listened to find good health care and make the most of it.
Center for Advancing Health - People's engagement in their health care. http://www.cfah.org/about/welcome.cfm
Prepared Patient Forum - What it takes to find good care and make the most of it.
Interview with Charlie Rose and Jessie Gruman on AfterShock: What to Do When the Doctor Gives You -or Someone You Love- a Devastating Diagnosis
Eugene Public Library - AfterShock Book Talk
— Moraga, CA
I have a wide range of patient experience, including pediatric treatment, adult treatment, general and cancer-specific care (radiology, oncology, surgery, emergency care, hospital care (including ICU), outpatient care, home-healthcare, and more), as well as a wide range of hospitals I have been treated at. I use this experience in my advocacy work, which focuses on working with healthcare staff and administrators to improve the healthcare experience for all: the staff as well as the patient. The range of subjects I can speak on is quite wide, and many are listed in the "Speaking Topics" section, but my specialties include: Patient and Family Collaboration, Coordination of Care, Uniform Health and Safety Standards/Training, and improving the Voice of the Patient. My current advocacy experience, which includes several national-level conferences of Kaiser Permanente, can be viewed on my Linkedin profile, of which there is a link in the contacts section. I can also be contacted for more information through my email, or by phone on afternoons and weekends. I hope to work with you soon.
— Danville, PA
Health information technology is one answer to breaking down the silos of information within the healthcare system. Silos exist between patient and healthcare provider, patient and healthcare system and provider and healthcare system. I am experienced in using technology to provide increased quality in patient care and reduce medical errors.
Unfortunately the majority of patients, caregivers, and hospital staff are not aware of the potential of improved patient care that health information technology brings. I work to educate and inspire anyone involved in the healthcare system to foster engagement at all levels.
My experience includes working with electronic health records, health information exchange, and developing technological innovations. I tell stories that bring understanding to these areas in a clear, effective, inspirational way.
On a personal note: Health information technology gave me more than just convenience, it gave me hope. Health IT allowed me to be a wife to my dying husband and a mother to our three children.
I am a proud member of the Walking Gallery. My story is incredible, exciting, emotional, and full of hope...and my jacket reflects my story.
— New Port Richey, FL
As a mental health e-patient I am interested in cultivating a Participatory Model of Mental Health Care.
My goal is to advocate for an increased awareness of participatory concepts and ethical mental health care that promote empowerment, including improvements in the diagnostic accuracy of psychotic disorders.
I am a volunteer for the International Society for Ethical Psychology and Psychiatry and my personal blogs serve to:
(1) Promote the consideration of medical conditions and substances that can induce a psychotic episode during the differential diagnosis of bipolar disorder, or schizophrenia.
(2) Identify some of the unique challenges that providers and patients dealing with psychotic disorders must overcome in order to establish a partnership that implements effective recovery strategies.
(3) Illustrate the benefit of incorporating innovative methods to facilitate participatory concepts and provider-patient partnership within the mental health care system.
— Dallas, TX
Joint replacements are the #1 expenditure of Medicare. These "innovations" fail about 20% of the time. The human cost is untold and taxpayers incur additional expenses as the industry "owns" the profit but is not accountable for costs of failed joint replacements.
My brother's Tornier elbow replacement was "revised" after just 4 months. When he asked questions, the Mayo Clinic surgeon/designer would not report the adverse event to the FDA/MedWatch-#500952. The Mayo Clinic has refused him all but federally mandated emergency care. The patient is on long-term maximum dose painkillers that dry his mouth so much that his teeth fall out in his sleep and he cannot access care.
I was invited and attended FDA Patient Representative workshop in DC 9/23 and 24, 2009. I spoke at the FDA/CDRH Town Hall meetings 3/10/11 in Irving(Dallas), TX and San Francisco, CA 9/22/11 about the medical and legal purgatory experienced by patients who receive failed implanted medical devices. To protect patients and our economy, the US Congress must make changes to federal public policy. The charter of the FDA must institute patient/consumer voting stakeholder rights, require a device warranty on cleared products, require all implanted medical devices to be cleared through PMA/advisory committees and provide an independent post-market registry on all implanted medical devices.
— Orlando, FL
Carolyn Capern has been a patient for 22 years (and counting). Through years of adventures in orthopedics and other branches of medicine, she developed a deep belief in the importance of active patient involvement in their own care. Thanks to a lifelong literary bent and her day job as a marketing professional, she is dedicated to telling her own story and the stories of others in an ongoing quest for a better health care system.
Carolyn has witnessed the best and worst of the American health care system. Shortly after beginning college in Washington, DC, Carolyn experienced a severe concussion that was misdiagnosed and improperly treated for several weeks. As a consequence, she lost her memories of the three month period following the injury. Then, in 2009, in the shadow of the Congressional debate over health care reform, she dealt with both knee realignment and sinus surgeries, while watching from afar as her favorite professor suffered through botched cancer treatments. Both of her problems were resolved with time and good care, while her professor ultimately died after being denied the same kind of quality treatment. His death, which occurred on her twentieth birthday, gave life to Carolyn's commitment to fight for equal access to quality care.
Carolyn writes and speaks with a holistic perspective, encompassing topics from health care, social media, and politics to pop culture, books, and youth activism. Her primary blog can be found at http://thoughtdujour.blogspot.com.
— Burke, VA
A passionate healthcare advocate, I have witnessed healthcare from many angles.
In 2004, I was the practice manager as my father closed the door on his OB/GYN practice because of rapidly increasing malpractice premiums. In 2008, I held the hand of my "bonusmom" as she passed away from Bladder Cancer just eight weeks after diagnosis, following years of missed warnings and a lack of communication at the hands of her doctor, a family friend, a trusted physician and my father's peer and colleague.
From major life events like the delivery of a child or the day you are told you have less than a week to live to the simpler life events like a medication's instructions -- I believe every patient has a right to have the same information their health professionals have and the right to have the time to ask questions and stay until they understand their decisions.
We have the research, we know the answers. We need to stand up for ourselves.
As patients, care providers, health providers, family members, and friends - I want to make sure patients know about the answers and feel empowered to ask the tough questions, staying until they have the answers.
— Alexandria, VA
Patient advocate. Daughter of a Alzheimer's patient. Type 1 diabetic for 44 years. Blogger for healthcentral.com/diabetes and bodyinbalancecenter.com. Owner of integrated wellness center, bodyinbalancecenter.com. Consultant to Sanofi US Diabetes. I believe that healthcare is a relationship between doctors, patients and the industry that supports us. The more people we having the healthcare conversation, the better opportunity we have to learn and work through the many issues that surround health, healthcare and our happiness.
— Washington, DC
I just moved to Washington, DC so that I could be more centrally located where I was spending my time speaking. While I include my present work below, I offer an idea of what I can speak about to any group of practioners, administrators, stakeholders, and patients. I custom tailor my message of patient inclusion to any audience and specifically to each group's needs. As well as the topic of patient engagement, I can talk about Mental Health Parity with Physical Health, LGBTQQ issues of disparity and Health IT integration from silo to silo. I consider myself to be a generalist who creates a unique and specific message for each invitation.
As a speaker/panelist/consultant I have had the opportunity to discuss many of these issues with (for example) the PCPCC Stakeholders Meeting(Patient Centered Primary Care Collaborative - March 2011); the IHI through a 3 part webinar (which I helped design) in the spring of 2011; again the PCPCC as a featured speaker on their weekly phone conference call; the AF4Q National Meeting for their Consumer Pre-Meeting in November 2011; as well as the NCQA consulting on the new set of survey questions for 2012 for patient centeredness.
For reference and a bit of historical perspective, I offer the following: I served as a member of the Medicaid Advisory Council (the federally mandated oversight committee for Maine's Medicaid program) from 2002 through 2011. I also served as the first contracted patient ever to serve on a RFP writing committee (for the move to BH managed care) in the state of Maine. Presently, I serve as a patient representative on the Working Group for Maine's Patient Centered Medical Home Pilot Project (Funded by the RWJF/Quality Counts) and was recently named to serve on the Steering committee for the Medicare CHT Pilot which will coincide with the PCMH Pilot.
I also serve on the Patient and Family Leadership Team which is the Patient engagement arm of the Patient Centered Medical Home Pilot.
• I serve as a Consumer Consultant for the Hanley Group BH HIT integration think tank.
• BH Integration Metric committee through QCME
• NCQA consultant for PCMH Pt. Engagement Survey (Aug '11)
I am a fierce patient advocate, known best for my constant reminders that if it is CALLED patient centered, there BETTER be a patient sitting at the table- every table - yes, that one too!
— Los Angeles, CA
Martine Ehrenclou is an award-winning author, health care advocate, speaker and patient. Author of The Take-Charge Patient: How You Can Get the Best Medical Care and Critical Conditions. she interviewed over 400 physicians, nurses, other medical providers and patients for both books.
Lecturing to the general public and medical providers on patient engagement, patient satisfaction, patient safety, health literacy and the patient-provider relationship, is her focus.
She has been interviewed on NBC Nightly News, KCAL/CBS 9 News, ABC News, San Diego 6 Morning News, Good Day Dallas, AirTalk with Larry Mantle (NPR) and many more. She has been featured in Prevention Magazine, Woman's Day, Family Circle, Los Angeles Times Magazine and more.
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